A Successful Trip to San Diego

Hi everybody! Sorry I haven't posted an update for a while, I figured that I would hold off until the end of the week when I could do one big update. Today, I woke up bright and early to fly down to San Diego, where my Mast Cell Specialist is (shoutout to my step mom, Beth, for also getting up early to take me to the airport). I generally fly Southwest, which is technically challenging, as I have an airborne sensitivity to peanuts and peanut dust. Southwest serves peanuts on all of their flights. In order to minimize my exposure to peanuts, and because of my immunodeficiency, I pre board in order to wipe off my set before sitting down. They also provide me with a peanut dust allergy slip which I hand to the flight attendant, which signals to them to not serve peanuts on my flight.

My flight there was uneventful, and I got a little cat nap in on the short hour long flight. When I got there, I was a little red and flushed, but I figured I was going to the right place. Another young adult with MCAS, Savannah, was kind enough to help me out today by picking me up from the airport, taking me to the appointment, and hanging out with me all day. I am incredibly appreciative to Savannah for making a physically exhausting day just a little bit easier! It was also awesome to get to meet another person with MCAS in person, I never have had the opportunity to do so. We had an awesome time together (at least I did), and I look forward to meeting up with her again (hopefully soon!).

Savannah and I at the end of our day!

Now, for the actual appointment, it also was a success! The Gleevec appears to be helping. I have only had to use one EpiPen in the three weeks that I have been soaking the coating off the medication, which for me, is a dramatic improvement. Also, other than 2 small flares, I have dramatically backed off of my Benadryl use. So, I got permission to start reducing my Prednisone (steroid) dose once I calm down from this mini flare. This made me a very happy camper, as I am NOT a fan of Prednisone. Not only does it have unpleasant long term effects, but short term, it makes me bloated, gives me cravings, gives me "moon face," and makes my hair fall out. I will have to reduce my dose very very slowly, but any reduction is a step in the right direction. In the mean time, I will rely on more Benadryl to reduce the dose of the Prednisone as necessary.

If things continue to go well, I will continue to back off the Prednisone, and a few months down the line, hopefully some other meds as well. We are hoping the Gleevec will continue to provide more widespread coverage. In the mean time, I will continue with Benadryl and Epi as needed, but hopefully not often. Additionally, we will continue to monitor my red blood cell count and my potassium, as both seem to have been affected by the Gleevec and the Prednisone. Nothing alarming, just something to monitor. The flight back home was also uneventful. I premeditated with Benadryl which reduced the "tomato" look after landing, but I still had some flushing. I was a little later for the flight than I would have liked due to me being a poor navigator, but I made it in perfect timing.

For this upcoming week, I have a friend from school coming into town, which is exciting, and otherwise, things are business as usual. I am hoping to maybe begin volunteering across the street at the hospital where I have been hospitalized in the past, in the Sean Parker Center for Allergy Research, which is conducting groundbreaking research on peanut allergies, environmental allergies, and much more. It would be nice to be there not as a patient! I don't qualify for their studies since my allergy is not a "classic" igE mediated allergy, but it still would be cool to be involved there.

One other thing-- I am participating in a Virtual 5k (where you walk for 30 minutes or a 5K at home and email a photo as proof) in June, and I would love it if you would join me! It is called "The Superhero Showdown," and is raising money for Super T's Mast Cell Foundation, which raises money to help patients like me with MCAS with medical and living expenses. Here is a link to join my team, Arielle's Mast Cell Milieu: https://runsignup.com/Race/Register/RaceGroup-355043?raceId=30904#.WMIjrldVqYg.facebook

Have a great week!
Arielle